This blog is to keep family and friends updated on the things going on in Karly's World. Karly is our daughter who was diagnosed with Wolf Hirschorn Syndrome (4P-). She is 5 years old and is such a loveable little girl.

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I am the proud mom of Ethan (9 yrs. old) and Karly (5 yrs old). My wonderful husband is Jim and we have been married for 6 years. Karly is our special little girl. She has Wolf-Hirschhorn Syndrome (WHS) an extremely rare chromosome disorder.

WHS kids

Thursday, April 1, 2010

2nd Annual Chili Cook Off For Charity

This morning we found out that the wonderful people of Rite Aid Corporation (including Karly's grandfather Don, second cousin Jason, and godfather Mark) have decided the proceeds from their Annual Chili Cook Off For Charity will benefit 4Karly'sKause, and in turn, the National 4p- Support Group http://www.4p-supportgroup.org/. We are very humbled that a great corporation like Rite Aid decided to support Karly and all of her friends. It's especially humbling this year considering our national gathering is coming up this July in Salt Lake City. There are many children and families that will directly benefit from this event and the money raised.

For those of you that don't know, 4KarlysKause has been a way our family has brought awareness of WHS to others, as well as a way to raise a little bit of money for those affected by the syndrome. It started out as an idea (and a website) a few years ago and has become a "way of life" for all of those that know Karly. The spirit of 4KarlysKause is always alive... even if the website is not updated! (That is why we use the Karly's World blog!!!) Since the inception, we have raised hundreds of dollars that has helped support the National 4p- Support Group and local charities such as United Cerebral Palsy of Central PA http://www.ucp.org/ucp_local.cfm/132. Examples of support include:

4KarlysKause has sponsored a hospitality suite at the last national gathering that allowed families from all over the country a place to meet and share stores about their children. Sometimes just having a place to talk with others that understand your struggles is the best therapy.

4KarlysKause has provided support to projects spearheaded by UCP of Central PA such as the Adventure Zone Playground, an accessible playground that allows all children, regardless of their ability, to play side by side. http://www.adventurezoneplayground.com/index.php. This by far is Karly's favorite playground, and we frequent it at least once a week.

Thank you very much Rite Aid Corporation, and employees, for supporting, Karly, her friends, and everyone involved with Wolf Hirschhorn Syndrome. Your support is amazing and inspirational.